JAG10

I've been trying to make sense of methylation on a very rudimentary level with only my dd11 is mind. Very rudimentary........ I was getting confused differentiating undermethylation and overmethylation; we'll say UM and OM. But I think what you have to do is look at what is left over when you're done mopping up the PANDAS antibodies. I mean, OCD and anorexia is associated with UM and the ADHD/learning/fog stuff is associated with OM....so how can you be both??? Well, looking only at clinical symptoms and no labs for my dd, I would say what were the symptoms that disappeared almost immediately with very first IVIG? restrictive eating, picking/trichotillomania w/skin, overt OCD, tics. These symtpoms were very impairing on quality of life. 75% of overall symptoms resolved with 1st ivig. What have been those lingering 25% symptom type; add, fog, attention, focus stuff. Not sure where immaturity/behavioral regression fits in, but I'm going to say with the ADD type. So, once you've "mopped up the mess" of pandas antibodies, you're left with an over-mythylated girl? Now ivig & steroids must have been having some impact on that process as well because we have seen slow improvement in those areas too, but leaves a fragile state of wellness, perhaps. I looked through dd's records and I don't have any histamine measurements. I always thought that because she had this terrible reaction to bug-bites (as do I and my mom) that it was a hyper-histaminic response and she made too much histamine. Perhaps that is unrelated to histamine production or neuronal histamine, idk. She does not exhibit seasonal allergies. The only related lab I could find was Absolut Basophils measured 3 times at 11, 12, & 28 with a reference range of 0-200, but pretty low which is associated with OM. Do you think this is why some kids look so "classic pandas" and some don't? Maybe the more "classic pandas" looking kids are UM? But didn't Dr. T say he thought all of our kids were low-histamine which would be OM? So....maybe some of the symptoms we are associating with PANDAS aren't really related to the PANDAS anti-neuronal antibody phenomena at all, but the underlying condition that helped make the child susceptible to PANDAS? I apologize if some of you are like...duh!

A little bit more copied from the article Kim provided above: Elevated histamine and/or elevated basophils indicate undermethylation. Review of symptoms and medical history can bolster the diagnosis. For example, most undermethylated persons exhibit seasonal allergies, perfectionism, strong wills, slenderness, OCD tendencies, high libido, etc. Overmethylated persons generally exhibit anxiety, absence of seasonal allergies, presence of food/chemical sensitivities, dry eyes, low perspiration, artistic/music interests/abilities, intolerance to Prozac and other SSRI's, etc. Conditions associated with undermethylation: Anorexia, Bulemia, shopping/gambling disorders, depression, schizo-affective disorder, delusions, oppositional-defiant disorder, OCD. Conditions associated with overmethylation: Anxiety/Panic disorders, anxious depression, hyperactivity, learning disabilities, low motivation, "space cadet" syndrome, paranoid schizophrenia, hallucinations. (Oct 3, 2003) Do we find this to be true? Or are we again a mixed bag not ever fitting neatly in any category? Kim, I am likely way off base, no doubt, but are you getting at that over or under methylation is a base-condition that may only be apparent after the "bad antibodies" from PANDAS are mopped up and then you can see the methylation backdrop that contributed to setting the stage in the first place? Seems most of our kids would symptomatically cross categories as they are described here. Another novice question.....when histamine is referenced, that is neuronal histamine, yes? which isn't the same as other measurements of histamine, I thought......

Kim, I'm so glad you responded. When I searched the forums for Factor V Leiden, you were the primary author! My dd11 is positive for Factor V Leiden R506Q single copy mutation. In February 2010, Dr. T ran a bunch of labs on my dd. One of them was for Factor V Leiden. When it came back positive, he said he didn't order it and that it was a mistake or that some other doc must have ordered it. It was not, but....whatever. He did not elaborate on her positive result. hmmm So, thinking this was a total red herring, I ignored it....until last night. You can see above we are playfully bantering about the MTHFR. I know nothing about that really, so I decide to look it up on the web. The first thing I find, I read and then come across an association with Factor V Leiden; this mutation can occur in tandem with MTHFR. Stopping dead in my tracks, I say...wait a minute, that sounds familiar. I look up my dd's records and sure enough, there it is in her labs. Ironically, I mentioned this "mistake lab" a long time ago in a post where my point was we can't all go chasing every lead we report to each other for example my dd's unrelated gene mutation.......doesn't seem as unrelated this am. I'm going to have to look into this more. Jill

Okay all you big brains out there...... Does FACTOR V (Leiden) fit into this at all? R506Q

Omg, you could do that all day, right? MTHFR how much does that cost? MTHFR this is what's been screwing up our lives?!?! Geez...we thought the PANDAS~it's not so black and white jokes were bad! It's just too easy.

Am I the only juvenile who sees MTHFR and immediately think of a swear phrase??? I was totally following your Olympics analogy Laura! I mean, not genuine understanding, but cursory doctor's office understanding. Thank you so much for the Olympic effort to put that together. Does everybody already know about this free webcast next Friday by Scott Smith on methylfolate yadda, yadda,yadda? http://naanyc.org/events/2011_12_09_ScottSmithWestchester.pdf I'd be totally lost, right? LLM....did you do the Yasko testing or did you guinea pig? I mean, if you walk in a typical docs office and tell them you want to run labs to screen for the different Olympic events.... what kind of reception are you going to get? The "oh, you're one of those" look, the "I have no idea what you are talking about so it must be BS" look, or the "sure, no big deal" reception?

:wub: Oh Laura! I was so excited to read this about your parent/teacher conference!!! We have both been chasing this measuring stick for awhile now and I am so happy for your son. I had one of these conferences too, last Monday.....where 2/3 of the teachers were sitting around the table looking like...why are we here meeting for this girl, and the other 1/3 who have been working with her for a few years had tears in their eyes as they discussed how far she's come and caught up. On the methylation, (which I just had to glance upward to spell correctly)......I haven't stopped reading, but I keep waiting for the layman's version, which may have been in a post I missed, idk. I realize that wellness for our kids is a fragile state.....kinda like the old TVs with tin foil on the antenae and you had to stand in just the right spot on the floor to obtain the clear picture......shift your weight slightly and the static would mess it up again? So if the correct supplements can stabilize that clear reception, I'm all for it!!! I also like that you have received some "normal" results for your son, that not every test is indicating an excess or deficiency; that always makes me skeptical too, even if I have no idea what I'm looking at. So, do you think you could lay that out? The components of a basic methylation check-up? Exactly where to start or who to work with if you don't need a LLMD in the picture (and w/o getting taken for a ride)? Limit the heavy jargon? You have a gift for crafting the perfect analogies for the rest of us so.......chop, chop.

My dd11's illness started in early preschool, making it very difficult to detect "sudden onset." By the time she was in K, she was already on meds for ADHD and she would "hyperfocus" and stare a lot. Things went from concerned to WHAM in March, 2007 spring of first grade. My girl had no medical chart filled with strep infections. I had no clue why she was just getting worse and worse. That summer, we took her to see a psychiatrist and ended up spending the next 2+ years trying all these different psych med cocktails in different combinations and different doses. My dd would get bad mosquito bites, scratch them sore, then pick the scabs til it ulcerated. It was awful. She had tics and OCD and ADHD and restrictive eating. I finally had enough and took her for another opinion. That's the doc that suspected pandas, but said she had had it too long for immunomodulating treatment. But she ran ASO and anti-DNAse B that were so high they were over the lab's tilt measure....and still had never been to the doc for strep: she was completely asymptomatic outside of behavior. So once I knew what I was dealing with....get out of my way! We did labs and abx in Jan, Feb, and March 2010. The steroid burst test was with Dr K in Chicago and her first ivig was May 2010. The anorexia stopped immediately. So did the skin picking and tics. Over several weeks, she was 75% better. Then Aug came and we hit a succession of exposures over the next 8 weeks and with abx got her back to that 70-75% mark, but then plateau. I realized at that point, for my girl who was likely sick 7+ years, the idea of "one and done" was not realistic. She needed more if we were going to get rid of those remaining 25% symptoms which included cognitive fog, ADD and behavioral regression. That's when we sought help from Dr B who had a reputation of good response from insurance. We paid out of pocket for Dr K and knew we couldn't keep that up. Then, we did a few monthly ivig, then this June switched to every 8 weeks. There were illnesses and bumps in the road along the way. But the bottom line is I have a 6th grader holding her own in a competitive school with friends. No psych meds since that first ivig. Well, correction; when we were hovering around 90% and couldn't hold that last 10% ADD stuff, we tried Straterra low dose, nothing; then Concerta low dose- tics one day and stopped. That's when we did the steroid taper that got her to completely normal, independent in school w/o support. You will have to read a lot and seek out members to whom you can relate either personally or by the similarity of your children. There is a lot in common and as much distinction. I also have a younger dd8 with mild pandas anyway, but also treated younger. She has been managed w/o ivig. It's hard to go back now, but when we did the steroid test, I made a list of every behavior I could observe and rated her every single day of the burst. For me, having those numbers to look at made me feel more confident that I did observe the improvement I thought I did that just seems weaker when you are just trying to describe it off the top of your head.

Mom2yo Hi. Quick question....did the improvement stop when you tapered down the dosage? Or was it consistent days 3, 4, 5, 6? My dd11 has done a taper w/Dr B and the first 5 days were the loading dose and day 6 was a decrease. If that's the case, you could ask Dr B to extend the loading dose longer to confirm your observations. I suspect that when kids are really sick for a really long time, it can take a lot to make a dent in the symptoms. My dd was sick a long time too before we did our " steroid burst" test and I had a similar reaction as you. Did I really see improvement? That was 18 months, tons of abx, and 8 ivig's ago. The last ivig we followed up with a steroid taper that got her to normal. I wish it was an easy fix, but it isn't. It's a long road only for the persistent and committed. Even at normal, it is a fragile state....like being a gangster in witness protection, you wince ever time you turn the key in the ignition wondering if today's the day. Sorry, I'm supposed to be supportive Someone said once that those on this board who say it's never too late are the parents of the kids who are too sick and it is too late for. I find that untrue. The first doc who suggested pandas told me my girl had been sick too long (at age 9,) so just treat with psych meds (that never worked long term anyway.) That doc was wrong to say it was too late for my dd to recover. It hasn't been easy, but it was not too late. Jill

I've heard college boards are prickly too, but I just thought I'd share..... I have two students at the high school with "speech/language only" IEPs. One for fluency and one for word retrieval, both academically advanced (but the one with word retrieval uses extended time for everything.) The counselor submitted the IEP and ER documents for both students. She thought NO WAY for the fluency IEP and that the other student would need a more recent evaluation than two years ago. BOTH students were approved for X 1.5 the allotted time for each section. This was for SATs/PSATs....is that the same board as AP exams? IDK. The counselor was shocked, but both had had IEPs since elementary school, so I think a long history helps, even though they are advanced students.

I noticed this quote too and was very curious about it.

Bill, Hi. This was our experience as well....almost the opposite of what should be expected. Meds would work great nearly immediately when they should have taken a couple weeks. After a couple of weeks, that's when they would either stop working or yield some undesirable side effect. Perhaps the build up of what should have produced the desired result was too much for my girl. This has always made me buy into the belief of pandas kids needing low, low, low dose. But let me share with you this.... My dd11 (almost 12, sigh) had been at 90-95% for quite some time after multiple ivig's w/Dr. B. Her remaining symptoms were ADD type of symptoms and not that severe. So, I thought....well, maybe she just had some ADD that wasn't related to this autoimmune/infectious based issue. So, we tried some low dose Strattera......nothing much happened. Then, we tried some low dose stimulant (concerta) and within hours, my girl who hasn't had tics in over 18 months starts with facial/mouth tics. I don't give her the stimulant the next day, tics gone. I believe that psychiatrist in CA, Dr. Jori Goodman stated if a child gets tics from ADHD meds that's a clue those symptoms are really pandas. I think he may be onto something there. So, after her last ivig, we did a steroid taper and that did it, that got rid of those remaining, lingering ADD type symptoms. So, I suspect the conclusion for my girl anyway, is that ALL of her symptoms are related to pandas/pans and there is no underlying condition. I guess that would be great news, but the steroids do come with side effects. She is fighting some weight gain, acne and moon face from the taper which can also be tough on a preteen girl. Anyway, long story short....the way your child responds to psych meds may very well be a huge clue. It was for us; heck, if they worked "properly" we would have stopped there years ago!!! But I caution folks not to waste too much time buying into the idea that they just "haven't found the right med yet." Jill

My dd developed a coughing tic years ago. It started as a normal cough and then morphed into a coughing tic/compulsion. A lot of her tic/compulsions started as typical, normal actions that morphed into more. She had a stretching one for a long time. She stretched so much I was afraid she was going to damage the way her back and spine developed. With the coughing, I told her she was all better and wouldn't cough anymore. She actually stopped. Of course, moved onto something else at that time..... These symptoms all disappeared 18 months ago with her first ivig and never returned, but she only had motoric involvement when she was very, very sick and highly symptomatic. Her core symptoms were more cognitively based. Now those are gone too. We've been very fortunate even though she went misdiagnosed and mistreated for many years. She is on grade level (6th) in a competitive school, social, activities in art, robotics and softball, and displays normal preteen girl behavior. She does still react to immune challenges, so we are not out of the woods yet, but her life is normal now.

Pow-Pow.....can you post a link or copy paste? Thx!

P16- What is going on with you??? When someone consistently gets soooo offended at the crossover of PANDAS dx and characteristics of Autism (which is all it is: a cluster of symptoms with no known etiology) it screams of self-consciousness. How many parents have to get on this board and tell you....my child had ASD until pandas treatment alleviated all/most symptoms, my child could have been dx'd with ASD if evaluated at their worst symptom presentation, but now they do not, ect., ect.???? Just because it isn't YOUR experience, does not mean it is not so. Nobody is claiming the two conditions are one in the same: we are talking the brain here, it's very complicated (there are soooo many factors you are failing to consider in your conclusions!) and people are going to be impacted differently! BUT... PANDAS and ASD characteristics are not mutually exclusive either, that seems pretty obvious to anyone who has been hanging around here as long as we have. My dds have never raged or displayed characteristics of ODD, but I don't jump on ever post denouncing that association. The fact that you feel compelled to repeatedly reject any association between ASD and PANDAS is indicative of a narrow, narcissistic perspective. Many, many people keep telling you this; some politely, some bluntly, but you are not getting the message either way. You have a lot to contribute here, but consider stepping outside your world and acknowledge that you and your experience are not the sum total of PANDAS. PhillyPA- Please don't leave; take a break, but don't leave. Your child's story is proof that this is true. Hang in there Melanie.

Hi Laura, This is fantastic!!! I'm sorry, I don't remember your dd10's hx, but I'm going to assume if she at one point in time had a pandas dx that you had some evidence of strep and behaviors? After you are done dealing with those underlying infections, do you have a plan of attack for when she is exposed to the viruses and/or strep again? Will you treat with abx and possibly steroids if the autoimmune arm becomes active again? Thanks so much for sharing your success and excitement! I was just sharing with some friends how my dd11 is devouring books lately, it's amazing. And my younger dd8 also completed a biome project (diorama of pacific ocean). I bet you are happy to play her board game with her anytime she wants!! Kudos to you for getting the job done. It's not an easy or well-paved or well-lighted road, but you made it anyway!!! She's so lucky to have you and you to have her. Congrats! Jill

I'm sorry....that's just obnoxious if you are not going to be responsible enough to feel-out young kids first. It's not like you took her to that Eastern State Penitentiary!!!!! :angry: So sorry Melinda, I hope she feels better soon!

That seems to be a key question in my mind. We are thinking/hoping that with some kids, when inflammation is gone, the BBB is tight enough for protection from the anti-neuronal antibodies, but for some that may not be the case....like you say; faulty BBB possibly? I've wondered if those that "outgrow" pandas are experiencing a "tightening" of the BBB when they stop physically growing (at least that is what my fingers are crossed for.) Otherwise, we are managing from episode to episode, trying to minimize exposure whenever possible and remembering to bask in the remissions in between. So steroids both shut down the response, the production line of antibodies and help the BBB at the same time? But are they promoting a "healing of the BBB aside from the reduction of inflammation? Cortisones also induce a degree of white blood cell death and is also believed that they reduce the "leakiness" of the blood-brain barrier. My girls are doing better than ever with the IVIG and IV steroid/oral taper combination. Fingers crossed, prayers made!

This is probably a very ignorant question, but hey-we're all friends, right? Thinking about those mice and needing meds to open the BBB....do psych meds have a component that opens the BBB so they work and if they do, wouldn't that mean all psych meds should eventually make our kids worse?

I'm actually as school-based SLP, so I work with all the special education students in a variety of levels/programs. Between the illnesses, allergies, drool, spit from lisps..... I've often wondered if there are so many nurses, therapists and sped teachers on this forum because we are skilled observers and diagnosticians or because we are bringing home so many germs! Probably both

The low IgG 4 and failure of pneumo strep serotypes is a familiar picture on here for those going the IVIG route. The IVIg provides passive immunity but you want to do your best to clear active infections prior, so keep on top of the abx. Your eclectic interests are curious......TX BBQ, cigars......nutrition, boxing..... Johnsmom turned me onto the BBQ Pit Boys and that was just the best ribs and beans I ever made!

JP, Hi. Have you had any other immune testing done recently? Ivig may be helpful also if your subclasses are low. I am also wondering what your level of exposure is? Do you work around children or serving the public? I know we are all exposed to a certain degree, but I work with elementary special ed kids so I swim in germs. There's always hope JP. You may not think at this point in your life you are likely to outgrow this condition, but that does not mean all is lost. My dd11 was sick many years, maybe 7 or more, before we knew it was pandas so she wasn't caught early like you will often see referenced here. Don't worry about that! Nobody has the answers, just different degrees of educated guesses. Since my girl has been treated with various abx, steroids and several ivig's, she has only become healthier and closely approaches neurotypical....just in time for the normal drama of teen world. Yes, ideally, many parents wish they knew then what they know now. Oh well, gotta deal with the present. Kudos to you for taking the driver's seat in your own life! I applaud your self advocacy and persistence. All the best! Jill

I think I know what you are getting at..... There are just too many unknowns right now as to how the pieces to the neuro-psych-cognitive-motor/tic picture fits together.....like trying to figure out a puzzle with only 25% of the pieces connected. I am an SLP. Of the 60 kids on my caseload, 20 of them are officially diagnosed with an ASD. 7 years ago, it may have been 4 kids for the same district/schools. Lots of reasons for that spike, not one single reason. Those 20 kids' function ranges from gifted and accelerated programing to MR/life skills.....they are all over the map, but usually very high or very low....not as much average. All of this is my opinion/observations/speculation: I would say of those 20 kids, 7 CLEARLY exhibit marked decrease in their specific level of functioning when sick or recently sick in the past. I'm not usually given the specifics about "what type of sick", but these 7 kids get way worse with the social and communication pieces. Most notably (and hardest to "therapy through") they become internally preoccupied and it is very difficult for them to be present, in the moment, with us.....regardless of the activity. I can also see increases in tics, self-stim behaviors, echolalia and stuttering. I would say there is another large portion of the 20, another 8 who are very consistent in the presentation of their symptoms. Now that I think about it....those students do not seem to get sick much, hmmm. I'll have to look up their attend recds. The remaining students are ones I would have difficulty saying one way or another because their parents are trying different psych meds, so who knows what is changing what. Another question for researchers to determine....the relationship between age of onset, timeliness of treatment (medical and therapuetic) and presentation of symptom set. I remember Dr. K telling me symptom set depended where/when development was interrupted. I think those of you with children with ASDs need to do every available therapy to minimize the impact of "interruption of development." Hit the brain-attacking beast from every possible angle {including prayer if you are faithful.} But the answer, cure, healing, whatever, will come from medicine.

It's all good information to be exposed to. Some people's children have gone downhill very severely, very quickly. Of course it's all relative, severity, but a truly severe case is rare. That being said, when it's your kid, it doesn't matter. You need to be taken seriously and quickly. Video taping is helpful when speaking to docs of known and unknown support. It is powerful material to have if you need it. It also helps interpret the subjective nature of behavioral symptoms. Doctors, nurses, therapists all have to judge you as an observer of your child's symptoms. Do you dramatize? Do you minimize? Video helps cut through that uncertainty we all experience dealing with those whom we are unfamiliar. Video of your normal and, now not so normal child helps give perspective if you can pull it together succinctly. You will have to measure advice given in the context of your child. Our experiences are all wildly variable. You don't want to be paralized by fear, nor brush this off. We've heard all degrees of reaction here, so naturally, there is a spectrum of advice.

Great point about the buzz words, Philly! Sad, but true. Great advice!